Back Again...This Time, For Good? Need Some Advice

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holo100
Regular Member


Date Joined Oct 2016
Total Posts : 58
   Posted 6/14/2018 12:41 AM (GMT -6)   
Hello, everyone. Looks like I'm back to this forum with a whole load of questions.

Long story short: I joined this board back in summer of 2016 when I was diagnosed with ulcerative colitis...or wasn't. I had three GI doctors give me three different diagnoses. One guessed "hemmoroids," another said "antibiotic-caused colitis, non c-diff," and the third insisted (to the point of screaming in my face) that it was ulcerative colitis. I finally went to a fourth GI in a different city. By that time, my symptoms of occasional blood in stool and cramps had disappeared entirely, without medication, and the fourth GI told me "You're fine, enjoy life."

Fast forward to January 2018, when I get the worst stomach flu of my life, followed by a round of acute colitis that landed me in the hospital for three days. Even then, the worst symptom was nausea and vomiting--no blood or anything. In March, that's when the blood in the stool started showing up...but even then, very intermittent, about once a week. Nonetheless, my new GI doctor (Number Four in the other city) said to get a colonscopy, which we did today.

Here's the diagnosis: pancolitis with ulcerations. He's putting me on Flagyl and Pentasa--Flagyl for 10 days, Pentasa for the foreseeable future.

Granted, my symptoms are a bit worse than they were in summer 2016--more loose stools, more frequent BMs, more urgency, and now occasional bouts of nausea. But not really diarrhea, and the bleeding is so minor you have to look for it. I get the prescriptions and agree with them, but...why such mild symptoms for pancolitis, which supposedly is severe? Shouldn't my toilet, in the words of my doctor, look like a "murder scene"? Shouldn't I be going 8-10 times a day instead of 3-4?

Moreover, he's also ordered a CT arteriogram of mesenteric vessels (small intestine). Why I have no idea. The doctor was not available to talk to after the colonoscopy today (he was very busy and had four of us today on a colonoscopy conga line), and the nurses were more concerned about freeing up a bed in the recovery room than talking to me. I can understand that procedure if he can't find the bleeding or he's worried about ischemic colitis--though I haven't had those symptoms either, really--but you'd think someone would've taken time to explain.

I know this is bolt out of the blue from someone who hasn't been here in two years, but can anyone give me advice on what's going on? Why I supposedly have a severe condition but mild symptoms? Why I've been prescribed what looks to be a fairly invasive procedure with no explanation other than "be here next Wednesday"?

ambling
Veteran Member


Date Joined Feb 2011
Total Posts : 725
   Posted 6/14/2018 2:17 AM (GMT -6)   
Sorry you've had a difficult time getting diagnosed.

You can have pancolitis that is mild, just as you can have very limited rectal disease that is severe. It would help to have a more thorough understanding of the findings from the colonoscopy, including biopsy results...

It is an odd procedure to suggest for you - CT arteriogram- but I guess he is trying to rule out Mesenteric Ischemia (inadequate blood flow to parts of the bowel). Patients with inflammatory bowel disease and infectious colitis can present with similar physical signs and symptoms, including cramping abdominal pain, diarrhea, as those with Mesenteric Ischemia.

I'd probably want to see the colonoscopy report and go through it with the doctor before any further tests. If you don't feel comfortable with the procedure, you could postpone it until you get a better grasp of the situation? But he may have reason to suspect M.I.?

The flagyl is likely being prescribed for any possible infectious condition. The pentasa is a very mild treatment for UC.


Good luck with the journey...

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16278
   Posted 6/14/2018 5:27 AM (GMT -6)   
I am sorry you're back. I agree with ambling, it may be mild. I think getting a visual of your upper is smart, in this case especially, because it sounds like the symptoms are somewhat vague. UCers usually do not get nausea unless they are having a severe flare up, and your symptoms sound fairly mild. Severe for me, means going 20x a day with tons of bleeding. It sounds like the doctor is trying to ensure an accurate diagnosis. I would request to review the report. If the scope was today, the diagnosis is based on visual, not on pathology. The pathology will not be available for a few days to a week. I hope the treatment gets you back to 100% quickly. If there's rectal involvement, you should definitely get on rectal meds. The majority of members use them regularly - treat from both ends.
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iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12515
   Posted 6/14/2018 8:29 AM (GMT -6)   
Thanks for checking in but sorry the bowel problems have re-emerged.

To me, it sounds like they're still guessing a bit what you got, prescribing Flagyl and Pentasa, and ordering a CT arteriogram of mesenteric vessels (small intestine)? Maybe they're just being thorough and double-checking. Flagyl treats infections (i.e., c diff), and doesn't do squat for UC for the vast majority of us (a few here say it helps them).

Ditto wait for the biopsy and scope report, and get copies. We can help you translate the medical jargon to layman.

Symptoms and inflammation severity can have a disconnect. I've had severe inflammation stated while I am only pooping 4-5 times a day. Generally speaking, remission is 1-2 bms a day, mild inflammation is 2-4, 4-6 a day is moderate inflammation, and 6+ is considered severe inflammation. Based on your description of your current symptoms it sounds like mild pancolitis; not severe pancolitis. My worst flare, I had 20+ bms a day (there's a point where you stop counting), sharp-knife stabbing pains, near incontinence, murder scene toilet water, etc. Mild flares, I've had a few drops of blood on my toilet paper, slight urgency, and 3-4 bms a day. So flares come in many different shapes and amounts of misery.
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, 40, UC Proctosigmoiditis
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holo100
Regular Member


Date Joined Oct 2016
Total Posts : 58
   Posted 6/14/2018 12:58 PM (GMT -6)   
Thanks, everyone. I appreciate the quick response. I thought I was some kind of mutant there!

I did manage to talk to my doc briefly today. (It's not easy because he lives 90 miles away.) He is basically trying to cover all avenues, and he doesn't have the biopsies back yet--and won't for probably at least a week. So he wants to hit everything--flagyl for any infections, pentasa against UC, and the angiogram in case it's ischemic, though he did say the latter is just a precaution.

When I had acute colitis back in January, the flagyl knocked that down quick, so I don't have an issue going back on it. It's also a low offender for c-diff, though I'll load up on probiotics just in case.

Thanks again! It always helps to hear from people who have been there.

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4187
   Posted 6/15/2018 3:54 PM (GMT -6)   
I'd rather have a doctor who tries to cover all the bases, like yours seems to be doing. Good luck with the procedure! Yes, Flagyl is used to treat c-diff, so you should be fine there. Probably good they are putting you on Pentasa, even though your symptoms are minimal. How confusing to have 4 GI doctors tell you different things in 2016!
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. Started 50 mg pred 6-9-18 & re-quit smoking 6-13-18. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax.

Bebopgeo
New Member


Date Joined Jun 2018
Total Posts : 4
   Posted 6/16/2018 5:17 AM (GMT -6)   
try cutting back on sugar. I have ulcerative colitis and I use to have to use the toilet ten to twelve times a day and each time there was blood and I was taking the maximum medicating but now I only have to use the toilet one's or twice a day and there is no blood and I don't take any medicating. what was coursing me to bleed is sugar in my diet. the more I cut back on food with sugar in them the better I got. it took me quite a while to figure that out some times I wood stop bleeding wright away and some times it wood take me a few weeks to stop. I have going back to eating most foods but not the ones with sugar in them. I eat less then the dally value% of sugar and if I cut back on all sugar my UC problem wood go away. but when I cut back on sugar I lost weight fast and I had a hard time keeping a good body weight

holo100
Regular Member


Date Joined Oct 2016
Total Posts : 58
   Posted 6/17/2018 2:54 AM (GMT -6)   
I've actually tried that, because I was diagnosed as prediabetic two months ago. I won't say that I've cut way down on sugar, but I did cut a lot of sugar out of my diet (cut back on soda, rarely have ice cream). I was knocking down four Dr. Peppers a day on weekends and eating a bowl of ice cream every night before this started--the symptoms got worse after I cut back on sugar!

I don't think there's an actual relationship there. Given the complete disappearance of my nausea after the colonscopy and while I was on vacation last month, I'm thinking the nausea might've just been plain, good ol' stress.
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